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My Doctor Refused To Test For Celiac


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8 replies to this topic

#1 glutenjunkie

 
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Posted 19 February 2011 - 03:37 PM

It runs in my family and rather than test me- she suggested I just try the diet. Well, I'm trying it *5 days in* I feel AWFUL. I asked a second doctor yesterday to test and she said the same thing and about what an inconvenience for me test would be (apparently a biopsy of my intestine).

Is this normal or is it time I find an entirely new practice?
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~*Lainne*~
Gluten-free cold turkey 2/15/11
Proud Autism mom to Kaelyn, also gluten-free since '08


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#2 adab8ca

 
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Posted 19 February 2011 - 05:56 PM

It runs in my family and rather than test me- she suggested I just try the diet. Well, I'm trying it *5 days in* I feel AWFUL. I asked a second doctor yesterday to test and she said the same thing and about what an inconvenience for me test would be (apparently a biopsy of my intestine).

Is this normal or is it time I find an entirely new practice?

Hmmm. I presume you have had other testing to rule out other causes of illness? There are blood tests that she can start with and the biopsy which is NO inconvenience at all...When I first went gluten-free (and I am a blood work AND biopsy confirmed celiac with no GI symptoms but mostly neurological) I felt like I was getting the WORST flu ever. Wow. If I felt like death on gluten, it was death-plus gluten free. Apparently, there CAN be withdrawal effects. I am now 5 months in, putting on weight, my vitamin levels are getting better and many days I still feel like crap. But many days I feel better, so I'll take it.

If I was in your shoes, I would want the testing. Unfortunately, it CAN come back negative and you still may be helped with the gluten-free diet, this has happened to MANY people here. However, I would still want to start there. If you can get a definite diagnosis, it may make the whole gluten-free thing easier. Again, because I was such a strange case, I don't think I would have ever gone this route if the neurologist I saw for my neuropathy didn't run is as part of a ton of autoimmune tests to rule stuff out. Celiac was the last thing they were expecting. So, it does make it a little easier to not question why am I doing this when my guts seem just fine...
Good luck! If you have classic GI and other celiac symptoms and really can't be tested by the Dr.,give the diet some time and you may be surprised.
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#3 glutenjunkie

 
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Posted 19 February 2011 - 08:00 PM

Hmmm. I presume you have had other testing to rule out other causes of illness? There are blood tests that she can start with and the biopsy which is NO inconvenience at all...When I first went gluten-free (and I am a blood work AND biopsy confirmed celiac with no GI symptoms but mostly neurological) I felt like I was getting the WORST flu ever. Wow. If I felt like death on gluten, it was death-plus gluten free. Apparently, there CAN be withdrawal effects. I am now 5 months in, putting on weight, my vitamin levels are getting better and many days I still feel like crap. But many days I feel better, so I'll take it.

If I was in your shoes, I would want the testing. Unfortunately, it CAN come back negative and you still may be helped with the gluten-free diet, this has happened to MANY people here. However, I would still want to start there. If you can get a definite diagnosis, it may make the whole gluten-free thing easier. Again, because I was such a strange case, I don't think I would have ever gone this route if the neurologist I saw for my neuropathy didn't run is as part of a ton of autoimmune tests to rule stuff out. Celiac was the last thing they were expecting. So, it does make it a little easier to not question why am I doing this when my guts seem just fine...
Good luck! If you have classic GI and other celiac symptoms and really can't be tested by the Dr.,give the diet some time and you may be surprised.

I think I'm going to switch doctors. I've asked to be tested for Celiacs and systemic yeast for over a year and all they keep saying is to try the diet. If I have systemic yeast, just the gluten free diet isn't going to take care of it.
I do have probiotics that I got for my daughter and I think I'm going to start taking them tomorrow and maybe on Monday I will look for a new doctor who knows a bit more about Celiacs, gluten and systemic yeast.
Thanks :)
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~*Lainne*~
Gluten-free cold turkey 2/15/11
Proud Autism mom to Kaelyn, also gluten-free since '08


#4 SaraKat

 
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Posted 28 February 2011 - 10:24 AM

Sounds similar to my sister's Dr- when I was dx'd my sister went to her Dr to be tested and her Dr told her if she's not having any symptoms then she doesn't need to be tested! LOL

Anyway, she is going to a new Dr to get tested. What is up with these doctors? I would tell yours you want the celiac panel blood test to start.
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Positive TTG IGA blood test 8/13/10
Endoscopy confirmed 8/31/10
Started gluten-free diet 9/1/10

#5 ravenwoodglass

 
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Posted 01 March 2011 - 06:50 AM

To the OP - Since you have a strong family history of celiac and symptoms I agree with the doctors who are telling you to give the diet a good strict try. Since both blood and biopsy can have false negatives and no matter what the results you would need a dietary trial your doctors advice is good advice. It sounds like they will give you an 'official' diagnosis if the diet gives you results, if that is something that is important to you.
For the folks who seem to be symptom free it is advised that you be tested anyway. Go to the NIH website as they are trying to raise celiac awareness. You should be able to find their recommendation that all family members be screened once someone in the family is diagnosed. Print that out and take it to the doctors with you.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 xalmostheaven8x

 
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Posted 04 March 2011 - 10:08 AM

Hmmm. I presume you have had other testing to rule out other causes of illness? There are blood tests that she can start with and the biopsy which is NO inconvenience at all...When I first went gluten-free (and I am a blood work AND biopsy confirmed celiac with no GI symptoms but mostly neurological) I felt like I was getting the WORST flu ever. Wow. If I felt like death on gluten, it was death-plus gluten free. Apparently, there CAN be withdrawal effects. I am now 5 months in, putting on weight, my vitamin levels are getting better and many days I still feel like crap. But many days I feel better, so I'll take it.

If I was in your shoes, I would want the testing. Unfortunately, it CAN come back negative and you still may be helped with the gluten-free diet, this has happened to MANY people here. However, I would still want to start there. If you can get a definite diagnosis, it may make the whole gluten-free thing easier. Again, because I was such a strange case, I don't think I would have ever gone this route if the neurologist I saw for my neuropathy didn't run is as part of a ton of autoimmune tests to rule stuff out. Celiac was the last thing they were expecting. So, it does make it a little easier to not question why am I doing this when my guts seem just fine...
Good luck! If you have classic GI and other celiac symptoms and really can't be tested by the Dr.,give the diet some time and you may be surprised.




I am new to this and just came across this post. I recently started the diet and have been feeling the same way you stated. I started off with symptoms similar to yours, neurological problems. Now, I feel like I have flu like symptoms and I am freezing all the time. When I ate gluten again, I actually felt better. I'm confused as to what to do from here. Does it get any better?
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#7 SGWhiskers

 
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Posted 05 March 2011 - 09:02 AM

Before you get off gluten, I would go back to her and restate that you would like the celiac blood testing and if she refuses, request that she make a notation in your chart that you requested and she refused the testing. I suspect you will get the blood work you are wanting. Then, go back on the gluten free diet if the results are positive. If they are negative, still go on the gluten free diet for 3 months because there are many many people who respond well to the diet even though they don't test positive on blood work or biopsy.

Your doctor has a potentially valid arguement for wanting you to just try the diet. There are plenty of people here who have never been formally diagnosed and are happy with their response to dietary changes. That being said, you still have gluten in your system and now is the BEST time for you to try to get a formal diagnosis if you want one. I have one and am glad I do, but would never put myself through a 2-3 month gluten challenge to getting a formal diagnosis now that I've been gluten free and healthy.

Good luck and be clear with your doctor about what you want.
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#8 gailc

 
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Posted 11 March 2011 - 07:22 PM

Many years ago I went to a 'Nutritionist/weight loss doctor' because the regular doctor's solution to my constant diahreah was to take metamucil. That didn't work. And my blood tests came back very bad nutritionally.

The new doctor did a glucose tolerance test and the results didn't match any of the standard results not normal, not diabetic, not hypoglecemic not one other thing. He suggested it was a food sensitivity, or addiction, not food allergy. His prescription was to only eat the three foods he specified for a while it had to be food I didn't eat regularly. He said I should have a nasty withdrawl from my irritating food, I asked what he meant. He said not as bad as heroin withdrawl but nasty-- so start on a Friday afternoon. Well by Sunday I was quite ill. Headache and Bad diahreah cramps and other stuff, I have forgotten the rest.

When I started feeling well again --no diareah too(about 4-5 days)I was to eat just one food I regularly ate for a meal and eat a lot of the added food. Start with corn sugar. Next meal a different food. Looking back at it he should have specifed milk as a second choice.
Many years later when I was diagnosed with Lactose intolerance I could drink a glass of milk--no problem, two glasses of milk and I wanted to die.
We found the foods this way. And upon reflection I realized I could have figured it out myself by eliminating a food for a while.

For me it turned out to be beef and eggs. He said don't eat them for 6 months. I tried a shorter time and it didn't work. Then I laid off them for six months. It worked. Eventually beef bothered me again right at the time we had mad cow scare and I emptied the freezer of beef and have never had a bite again.

Back to the present..
So I am now eliminating gluten, I had headache for a few days and now no gluten for two weeks tons of gas starting almost two weeks ago, I must have added some food or increased some food. So now I will try no onion and no rice in addition to no gluten. Been eating more of those and I know rice gives me problems.

Oh the no gluten eliminated my pain in three places right away, and the awful constipation and maybe more symptoms, too soon to get my hopes up. I started feeling better right away.

I would say if you eliminate a food and feel awful and that 'food' is not water then you have a problem with that food.
If you also eliminated caffeine, it may be that.


Note also that if you eliminate gluten you may also be eliminating yeast or something else which is why I added rice bread, dumb move for me.

I hope this sets your mind at ease.
gailc
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#9 MitziG

 
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Posted 02 April 2011 - 08:46 AM

Who is paying for the test, you or her? If your doctor wont provide the service you are paying her to do, time to find a new doc!
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